By the time I was diagnosed with a progressively disabling disease in March of 2006, I was walking with a slight limp and could no longer run or jog. Back then, my experience of disability was solely one of losing leg strength. This corroborated my naively simplistic, pre-disease definition of disability- not being able to get from point A to point B. Disability equaled wheelchair use. After my diagnosis, whenever I traveled down the worst case scenario path of GNE myopathy (aka HIBM), it always dead ended with me in a wheelchair.

I quickly learned that just because my ability to move around upright wasn’t impaired, it didn’t mean I wasn’t disabled from engaging in activities that had brought me so much joy and fulfillment throughout my life: hiking, biking, kick boxing, dancing, ice skating, skiing, walking on the beach, getting in the ocean….Though each of these abilities was painful to lose, eventual acceptance of their absences allowed me to access their alternatives. I eventually transitioned from mourning the losses to celebrating the gains that adaptive devices and motorized machines had made. In essence, I was able to appreciate that at least there were substitutes.

Then the upper body weakness set in. It had actually been there all along, but not in the significant, disabling way it was slowly morphing into. How foolish I had been for believing that not being able to walk was the most dreaded outcome of this disease. There is an easy fix for that disability. Such is not the case for hand, arm, upper back and shoulder weakness.

There are periods of time throughout the day when I don’t actively engage my legs-seated in a chair while working, eating a meal or watching TV or while sleeping in bed- but there are never moments when I don’t need to use my hands.

Early on, I mourned the losses of the fun, optional activities my upper body used to afford me: playing guitar, playing piano, throwing a ball overhead, walking while holding a beverage. But now, I’m gradually struggling to perform tasks integral to my daily life: opening jars and containers, taking things out of the refrigerator and oven, lifting something off a shelf, taking on and off clothing, shoes and jewelry, typing on a computer, writing with a pen, clipping my nails, cutting my food, firmly shaking hands, hugging. Yes, hugging.

It’s been years since I’ve made New Year’s resolutions. I used to relish the opportunity to set intentions from a clean slate. It was fun to challenge myself. But after my diagnosis, when my scale of what mattered in life forcibly recalibrated, none of the prior resolutions seemed to hold much weight. Quite frankly, it all seemed so silly. Battling a chronic disease, I no longer had the luxury of seeing life through short-term, annual goals. I was forced to take the long view. I had to resolve to find a way to survive emotionally while my body deteriorated physically.

It took me a couple years to figure out how to navigate the process. I hid for a while, not knowing how to accept what was happening to me, let alone share it with others. I was stuck in wishing it weren’t true, in wishing people would never find out. Back then, I was still able to hide underneath some layers.

I can’t quite remember when I peeled off the first outer layer. Maybe it was when I burst into tears sitting in my residency program director’s office, telling him about my recent diagnosis. Or maybe it was when I stood on the street corner in front of my office building, spontaneously telling my new suite mate my secret.

If you are someone who believes that life needs to be okay in order to feel okay, this piece is dedicated to you.

I was once you.

Before I was diagnosed with this disease, I believed that I could only be happy if life was working out the way I wanted it to or the way I believed I needed it to.

Throughout the last almost 12 years, I have learned from where true happiness comes. I have learned that there is one essential ingredient required to sustain a fulfilling, meaningful and authentically happy life. Turns out, it’s even backed up by scientific research and data.

I invite you to read my latest column for the Jewish Journal, “Scary, Uncertain, Happy,” to find out just what it is…

It’s that time of year when friends and families gather together to celebrate all that they have. Facebook and Instagram feeds blow up with hashtags like #Thankful, #Grateful and #Blessed. We focus on silver linings and bask in the light and warmth of bright sides.

I am a huge fan of gratitude, be it on Thanksgiving or any old regular day. I wholeheartedly subscribe to the notion that regularly experiencing gratitude improves one’s internal emotional quality of life, as well as one’s physical health. But sometimes I wonder if the push towards gratitude and “positive thinking” is incompatible with the messiness of life. As humans, we tend toward binary thinking- people are either good or bad, decisions are right or wrong, feelings are happy or sad.

We are grateful or we are unappreciative.

Throughout the last 11 years of living with this progressively debilitating disease, I have learned that I can actually hold multiple opposing feelings in one hand. I don’t have to choose one over the other.

I am grateful that this disease has allowed me to evolve psychologically and spiritually and I hate that I have to have this disease at all.

I have always drawn a clear line between my personal life and my professional life. I pride myself on being a “boundaried” therapist. I don’t typically disclose details of my personal life (e.g. whether or not I have kids) and I don’t insert my feelings or opinions into the room. I welcome questions of any nature, but rather than offer answers, I use those moments as opportunities to explore what may be coming up on behalf of the patient. I have always subscribed to the theory that the more patients know about their therapists, the less authentic they may be; they may be more likely to censor themselves out of fear of being judged or in an attempt to please the therapist or there may be other subconscious processes that could potentially contaminate the work.

Let everything happen to you
Beauty and terror
Just keep going
No feeling is final

–Rainer Maria Rilke

I’ve had some hard moments in these last few weeks. I’ve had to navigate some unexpectedly tricky terrain on middle school tours while trying to keep up with the rest of the pack. I’ve had to face the fact that I can no longer walk across the grassy area where all the families with young kids traditionally congregate after high holiday services. I had to stand up in front of all the parents at my younger son’s class social to talk about my role as the fundraising rep while simultaneously realizing that I was having trouble simply standing. And then I had to ask a mom whom I barely know to link arms with me to help get me up 4 stairs.

This weekend we had the honor and pleasure of attending my husband’s cousin Julie’s wedding in Washington D.C. Julie is one of those shiny bright sparks in the world. She is the definition of exuberance. (Don’t take my word for it, just ask one of her eight best friends/ bridesmaids.)

Not only were we excited to celebrate her marriage to the equally fabulous Justin, but we were thrilled to take the boys to D.C. for the first time, even if just for a few days. We were going to take in as many sites as possible and our dear friends were coming in from New York to spend a day with us.